Blog & News

Below is a summary of two recent articles from the European Respiratory Journal looking at lung function in PCD: 1) Sejal Saglani wrote an editorial entitled “Lung Function in Primary Ciliary Dyskinesia: Breaking the Myth that this is a Mild Disease” and Florian Halbeisen, et al co-authored a paper entitled

UPDATE: Link to the recorded webinar: Fact or Fiction – Common Myths Encountered in Genetic Testing for Primary Ciliary Dyskinesia ——————————————————————————————————————————————————————— The American Thoracic Society (ATS) and the PCD Foundation are pleased to offer the following PCD patient education and awareness activities during PCD Week at ATS, July 15-18, 2018: July

Using rigorous evidence-based analysis, this document provides an overview of available information related to best practices for diagnosing PCD and addresses some of the challenges and misinformation currently confronting clinicians and patients in their PCD diagnostic journey. Enjoy! Please note, this is located in the ‘pediatric’ section of the ATS

We’re proud to sponsor the outstanding abstract submissions of this year’s ATS Travel Grant awardees. Congratulations, Dr. Goyal and Dr. Hannah! The first abstract is from Vikas Goyal, MBBS, FRACP and the Australian group comparing two forms of antibiotic therapy for children with bronchiectasis (including PCD). You can access the

PCD diagnosis continues to be challenging. All current testing options available to aid in PCD diagnosis (biopsy with TEM, nasal nitric oxide measurement, high-speed videomicroscopy, immunofluorescent assay of ciliary proteins) have limitations and do not work in all cases of PCD. Genetic testing is getting better all the time, but

Summary PCD on the Move 2017 (OTM 2017), the fourth annual North American scientific meeting dedicated to primary ciliary dyskinesia (PCD), focused on how to move ciliary/PCD science into practical applications to improve the quality of life for individuals with PCD. PCD OTM began in 2014 as a way to

The PCDF is pleased to announce the celebration of 15 years of supporting research and patient support, which will take place on October 11th 2017 in Chicago, IL. The benefit will honor Drs. Michael Knowles and Margaret Leigh, who have been the pioneers of PCD treatment, research, and care. In

Excellent new paper by Dr. Adam Shapiro, et al on the value of nasal nitric oxide (nNO) measurement for the diagnosis of PCD published in the Annals of the American Thoracic Society (ATS) last week. The summary abstract is available by clicking on the link above. Long discussion below for

Good news! The PCD Foundation is now a member organization of The Research Acceleration and Innovation Network (TRAIN), a program of Faster Cures. The goal of TRAIN is to bring patient groups, researchers, government agencies, industry and private funders together to accelerate research on rare disorders. Membership in the network